My news

[shanco]

Hiya,

Got a phonecall form my son's neurosurgeon's secretary late last night asking if we could make a post MRI appointment with his NS today.  Naturally we dropped everything and made it!

Turns out my just turned 5 year old son has a 24mm herniation, which is really rather large, isn't it?  He has not so far suffered any syrinx despite a rather blocked CSF flow and it seems the NS is keen to keep it that way.  He is happy that his neck injury has subsided to the point where he would be happy to operate and wants to do it April or May.  All good news in my book. 

I do have 2 questions - NS mentioned that it is his practice to not close the dura with a membrane and CSF fluid may leak as a result.  How common is this - both the practice and/or the leakage?

Secondly, he said that he should be back to school within 3 weeks of the op.  How likely is this?  I just doesn't seem to tally with my understanding.

Thanks [smile]

Sarah x

[shanco]

Eeeeeh.  [smile] is a hangover from other fora

[Marina]

Unfortunately I can't help you Sarah, so I just wanted to say good luck with your son's upcoming operation.
Let's hope the N/S is right and your son is up and well within a few weeks.

Hugs, Marina xx

[Victoria]

Hi Sarah

Luke didn't have a patch either as his neuro said it can lead to more complications but did say each neuro has their own opinion on this and many do patch.

Luke is hopefully going back to school for 3 mornings next week and that will be 6 weeks post op, the only thing we were told was he would need to be off quite a few weeks. Luke was readmitted (again) last Thursday with severe headache, another MRI found nothing so was observed over the weekend. He just got better and better and is now better than he has been since his op so was discharged on Monday. We found until last weeekend Luke's walking was very slow and concentration was poor but even this seems to be better now. The mild headaches are still there but seem to be more morning and evening.

Great news that you are going to get a date soon, this waiting was the worst part for me!! Once we were admitted confidence took over !

If I can help in any way please get in touch as Luke's .....been there, done that, got the zip!!!!!

Victoria xx

[jade]

Hi,

Like your son I had a large herniation also and my NS didn't do a patch either! As for school I don't know from my experience I'm 26 and was back at work after 9 weeks and still had tough days. I wouldn't put any time limit on it, just see how it all goes and how he feels.

And thats great news

Jade xx

[penfold]

Hi there!

I had a 10mm herniation, No syrinx but my flow was very restricted but i had no patch either! I have been off from work since the op which was in November but I REALLY!!!!! want to get back now!   I reckon 3 weeks might be a bit ambitious but i reckon kids will bounce back better than us whiney adults

Good luck though, and remember that the school should be helping you out too so dont feel too pressured. He will let you know when hes ready!

Laura xx

[annemarie]

Hi Sarah

As far as we are aware Natalie did not have a patch (and could probably have done with a leak instead of the shunt she now has - sorry warped sense of humour) and had no problems as a result.

She was back at school 7 weeks post op following her readmission and shunt (as an emergency).

I think 3 weeks is a bit optimistic really as I could 3 weeks following Natalie's surgery not see her going back to school after 6 never mind 3 and that was with her decompression being VERY straightforward at the time.

School may not be comfortable with him going back then either because they have probably never had to deal with the aftermath of this kind of surgery and will be worried about looking after him.

A phased return is a good plan - we planned that for Natalie but it really never happened as she had one day in, the following off then decided herself she was going back full time (she was 15 on the day she went back to school so was probably more able to judge for herself if she was up to it - but I thought it was too much too quickly but you know what teenagers can be like!!)

Only time will tell when he is ready for school don't be afraid to take it slowly. You know your son the Neuro does not and YOU will know when he is ready. That was one of the things that I was pleased with at Alder Hey - they didn't put a time frame on recovery but said we were probably looking at 6 weeks ish depinding on how she recovered.

Good luck with his operation

AM xx


Victoria - sorry to hear Luke has been back in again hope he is properly picking up this time and that school does not wipe him out too much xx

[Sarah]

Hi there, I dont know how long my herniation was, but I didnt have a patch either, cos it can somtimes cause scar tissue to build up onto it.

I was back to work after 8 weeks, on a phased return, and yes kids do bounce back quicker than us, but I would take it one day at a time with him.. He will soon start getting on your nerves, and then you will know that he is getting bored and needs to go to school.  Also the school should help you like the others have said.  Either speak to your school SENCO (Special Educational Needs Coordinator or head teacher and figure something out for him.

They can give him stuff to do at home and reading books etc.  Got my follow up  MRI tomorrow.

TC
Sarah

[shanco]

Thanks everyone

Seems all very reassuring, and pleased that you all also seem to think that 3 weeks is a bit on the skinny side!

He's already under the SENCO at school, Sarah.  As soon as they found out about his condition they put him straight under her so she could co-ordinate anything that he needed (they are a properly on-the-ball school) so we have a head start there.  It's a good idea to start his phased return from home too - thanks for that! (PS thinking of you and hope you're not too long getting the results of your MRI)

Sarah x

[shanco]

Drat - meant to say really sorry to hear Luke has been back AGAIN again, Victoria.  You must all feel like you are on elastic!  But great news that he is starting to feel better at last.  I'm sure I WILL be in touch!

Sarah x